Monday, 30 April 2012

Health Writer's Month: Words, Words, Words

Today's Health Writer's Month Topic is: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further.

OK, well I went to Wordle's Create page, and typed in the address for Sometimes, It Is Lupus.  This is the word cloud it produced:

Wordle: Sometimes, it is Lupus
This is a thumbnail link - click it to see the actual wordle full-sized and readable!

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

Sunday, 29 April 2012

Health Writer's Month: May's About to Pounce!

Today's Health Writer's Month topic is: Six Sentence Story. In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences. Check out some here:

The end of April's taken me by surprise. I had Easter, you see, then I was sick, so I really didn't notice that May was sneaking up and preparing to pounce. May is quite an exciting animal this year, or at least the first half of it is.  In that time, I celebrate my birthday, Mother's day, World Lupus Day and my bloggiversary. Yes, will be a year old on the sixteenth of May! I'm unprepared; not even begun to think how I will celebrate all these amazing things, and how I will make sure I stay well enough to enjoy them all.

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

Saturday, 28 April 2012

Health Writer's Month: Back to the Beginning
Today's Health Writer's Month topic is: The First Time I… Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

I have had so many "firsts" since I started this whole lupus activism thing. But the big first was of course that very first post, almost a year ago. It was the 16th of May last year, and I was complaining about the late autumn cold making my joints hurt.

So far, that post has had a total of 18 page views.  My blog was definitely launched - with no fanfare and no idea of what I was doing - and very little audience.

Going back almost a week before that first post - the 10th of May, had been World Lupus Day.  I joked on Facebook that the way to celebrate was with a handful of painkillers and a long nap. Over the next couple of days that bothered me.  I've always worked to the idea that if I saw a problem I should do something about it, not just complain.

The problem I saw was that lupus wasn't widely understood or recognised - there's huge public awareness campaigns about diseases like breast cancer, which is fair enough, and those campaigns lead to dollars invested in research into better treatments, better patient outcomes. It's not that I resent the "popular" diseases, it's just that I think lupus ought to get that same attention. We need people creating awareness, making it cool to put money into researching our condition: but whose got that kind of energy?
I'm a former journalist, and I'm a Christian minister. What I know how to do is communicate. So to me it made sense that my contribution would be to talk about lupus to anyone who would listen.

One of the first things I learned, of course, is that people don't read blogs they don't know about. I had to learn to use social media - twitter, Google Plus, and have recently even given this blog its own separate Facebook and Google Plus pages. Each new piece of social media has meant just a little more work - but it's also put me in contact with some amazing people I never would have met otherwise. It's how I discovered I wasn't alone in this project, and discovered that all over the world, there are people like me, trying to make the world aware of what it is like to live with lupus.

In some sense, I feel that my lupus blog is a vocation, very much like my call to ministry. I do hope that in some way God does use what I do online to help make life better for people with lupus.

This post written as part of Wego Health's Health Activist Writer's Month Challenge.

Friday, 27 April 2012

Health Writer's Month: Challenges and Victories

I'm a very inactive activist. (An inactivist?)
Today's Health Writer's Month topic is: 5 Challenges & 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Wow, I'm looking at this and wondering if "health focus" in the topic relates specifically to my health - or to my "health activism".  (I put that in inverted commas because, let's face it, I don't go anywhere or do anything - I sit or lie in my room and type. I'm a very inactive activist.)

For the sake of having something to talk about, let's go with my inactive activism. My health, of course, impacts on that anyway.


  1. There's always a question as to how much of myself I put "out there". How vulnerable should I become?  Honestly, I didn't think about it at first, I just sort of stumbled into blogging and social media. Then Pill Poppa, from Taking Pills 'n' Paying Bills mentioned that she was thinking of "coming out" and telling people who she was. At that point I started to wonder if sticking my name, my face (often without make-up - horror), and even my email address out there in the public was a good idea.  Ultimately, though, I think it was.  
  2.  There's an issue with the days, and weeks, I just feel too sick. It helps a lot that I have my little netbook computer that I can use while lying in bed. (My amazing son did a lot of research finding the right computer for me. When the first one died, we bought another one almost identical!) Despite that, I do have a problem with consistently producing blog content. 
  3. I have to try to balance this work that I hope one day will pay (but certainly doesn't now), with the actual ministry work I do in the real world, which I feel is also vitally important, and which does pay the rent.
  4. I have a sense of isolation. When I see conversations between activists in the USA on twitter - I realise that most of these people know each other face-to-face. I'm on the other half of the planet, and in all probability, will never meet my "colleagues". On the other hand, I've just made contact with the Lupus Association of Queensland on Facebook - and am really looking forward to meeting other local lupies at a barbecue for World Lupus Day.
  5. There was the challenge of expanding Sometimes, It Is Lupus to its own Facebook and Google Plus pages. Each of these means creating that bit extra work for myself - but it also creates the possibility of spreading lupus awareness, and offering support to people with lupus, to a wider audience.


  1. The first time I felt I'd really done something worthwhile with this was when a friend who lectures in nursing told me she was recommending her students read my blog to find out what life was like from the point-of-view of the patient - and gave me a topic she'd particularly like me to write about for them.
  2. When I get feedback from other people with lupus, that says my blogging in some way helped them, that is a great incentive to keep going with what I do.
  3. I recently had a lovely email from a lady who I don't know personally, who doesn't have a chronic illness, but who says she now understands something about what life is like for people living with lupus and similar conditions. This was my original goal - to build awareness among people who don't have lupus.
  4. The first time I passed 2000 page views in a month and I realised someone somewhere was actually reading.
  5. Finding I'm becoming part of an amazing on-line network of people with lupus, with other chronic illnesses, who throughout the world offer each other support and encouragement.
Sometimes, It Is Lupus is still less than a year old. I have no idea what its future will be, whether my challenges or little victories to date will ever make any real difference to anything. For now, I will keep making my little bit of noise about lupus - and hope that I'm adding something worthwhile to the millions of words floating around the internet.

This post was written as part of Wego Health's Health Activist Writer's Month Challenge.

Thursday, 26 April 2012


Last week, I set out to try the SlimKicker website. This is my review of  the site.  I do have an initial confession to make - I didn't do the whole week. My lupus was flaring and I was just too sick to care about anything.

That said, I asked a few other people to look at it with me.

The site is meant to turn weight loss into a role playing game.  My experience of RPGs is limited. (I once attempted to play Animal Crossing, but had trouble understanding the map.)  So I asked Mr 18, who has been playing RPGs most of his life, and who is studying IT what he thought. He had a good look at the site, and said it was well-laid out, easy to use, and the concept was good.  Since he's Generation Y (the target audience), I'd say that means the site gets a big tick for usability.

Actually, even I managed to work out how to use the site, unaided, so it is definitely very usable. 

I took the computer to the Thursday Night Weight Loss Group at church. We had a play with it there. Everyone liked the idea.  We wouldn't necessarily swap from our Calorie King website over to using it, but we could all appreciate that the site has appeal, usability, and catches the participant's interest.

The game gives out points for entering the food you eat, with extra points for what is seen as particularly healthy choices.  It also gives points for exercise.  (I couldn't enter my exercise, because it doesn't allow for things like hydrotherapy - and there's no way I could find to enter a custom exercise that's not in the database.)

Along the way, you can take up extra challenges (for people familiar with RPGs this is like the quests you can do in some games as extras to the storyline.) An extra challenge, like eating salad once a day for a week, can give you a couple of hundred extra points.

Gain enough points, and as with other RPGs, you "level up", or go to the next level. Each time you level up, you gain a reward - something you've chosen in advance to give yourself.  This is a fairly useful tool in weight loss or any other behaviour change - to reward yourself when you have achieved mini-goals along the way.

In terms of the diet itself - there is no diet set, but there is a recommended calorie intake for the day, and a recommended target for the amount of several nutrients. Most of this looked fairly standard.  I was a bit surprised initially about the recommended amount of sodium - but on checking the Australian National Dietary Guidelines found it was at the high end of the healthy range of sodium intake.  (My own regular sodium intake is at the low end, so I was way below the target point.) The fat intake target was another matter completely.  The site set a target for me of in excess of 90g of fat per day.  Checking the Guidelines, a healthy fat intake for me would be 20 to 25 per cent of my energy intake - working out to a maximum of about 35g of fat per day. 

It also has benefits in terms of portability, as it comes as an iPhone app, as well as a website.

So, all in all, would I use this long-term? Probably not. I'm not the target audience, being a generation too old and not so interested in RPGs. I also use a Blackberry, rather than an iPhone, so wouldn't be able to use the phone app. And, of course, because of my health condition, I can't do the kinds of exercises SlimKicker recommends.

On the other hand, if I were 25 years younger, did not have a chronic illness limiting the type of exercise I'm able to do, and had an iPhone - I'd probably find SlimKicker very attractive indeed.

Note: this is not a paid review. But it was done at the invitation of the app developer.

Health Writer's Month: LUPUS BITES!

Today's Health Writer's Month topic is: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

If you've been reading Sometimes, It Is Lupus through the week, you already know my tagline.

You've seen it written on my mascot. Yep, my tagline sums up just what I feel about lupus in two words: LUPUS BITES!

This goes back to the history of where lupus got its name - people thought one of the rashes often involved in lupus looked like a wolf bite.  But it's also what lupus is like to live with. It's savage and painful. It totally bites.

Post written as part of Wego Health's Health Activist Writer's Month Challenge.

If you like my Lupus Bites wolf - he's available on shirts, mugs, etc, from

Wednesday, 25 April 2012

Just for Fun: It's Never Lupus!

I know I've stuck this on the blog before - but I'm watching the first season of House on DVD again - and thought I just had to share this.  House came out just after I was diagnosed with lupus.  The kids and I watched the whole first season just waiting for them to suggest that it could be lupus. Each time the kids would ask: "could lupus do that?" The answer was always, unfortunately, yes it could - but I was diagnosed and was being treated. The fictional patients in the tv series always have an extreme, advanced case of whatever, that remains undiagnosed until they reach Dr House and team.

Health Writer's Month: Painsomnia
Today's Health Writer's Month topic is: Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

Hmmmm stand back and write about myself as if I was someone else? This could be interesting (or quite boring, or maybe even disastrous). Oh well, let's give it a go.

Painsomnia. She knew the term, had known other lupies to use it. She'd even had a few nights where pain had interrupted her sleep - but never this bad before.

This night it was her ankles. They felt as if they were the size of beachballs. The pain was so intense, she wasn't really aware of any other part of her body.  Deep breaths. Try to relax.

Her own breathing, the snoring of the elderly dog beside the bed, the purring of the cat beside her feet, the hum of the airconditioner, the scratching and scrambling of some night animal outside the window. Why did they all seem so loud tonight? Surely the sounds were the same every night.

"Relax" she said out loud, "relax".  Her ankles didn't hear, or didn't want to obey.

She had to do something! To do something, anything meant getting out of bed - meant using those same traumatised ankles to hold her bodyweight.

Pain pills. She could take some meloxicam - hadn't had it for a couple of days.  All she had to do was walk to the kitchen.  Every step was agony. Her feet were swollen as well as her ankles, the pile of the carpet felt like needles sticking into her feet. In the half-light she found the appropriate pill, and took it with a glass of water that seemed extra-cold. She padded gingerly back to bed.  Somewhere in the back of her mind she could hear the almost-forgotten voice of a deportment teacher saying: "A woman doesn't walk into a room, a woman glides into a room." Not tonight. Tonight, just making it where she was going was enough. Gliding could wait for some time when her ankles felt like ankles.
Lying awake.... Hoping for the meloxicam to kick in.... Her stomach started to churn - meloxicam without food will do that to you. Her ankles were still screaming at her. The airconditioner, the snoring dog and the purring cat were all getting louder. So much noise! So much pain!

 A hazy thought forced its way into her mind - ankle supports. Somewhere she had elastic ankle supports. She hadn't used them for ages - wary of putting elastic around her ankles when she had a condition where circulation could become a problem. But now she was beyond the point of desperation.

It meant getting up again. She tried to delay it, tried to think of anything other than the pain. But it was inevitable. Once she'd had the thought she would have to act on it. Again, the torture of the harsh pile of the carpet attacking her tender swollen feet. She searched in the half-light, not wanting to turn on lights and disturb the animals for fear that she would have to go to some effort to get them (particularly the geriatric dog) settled again.

Eventually she found them.

There was something reassuring, comforting, in just having her sore swollen ankles compressed in the elastic.

She lay back. "Relax, breathe deeply," she told herself.

The cat moved and leaned against her right ankle and foot. The soft purring was actually soothing.

Slowly, the pain eased. The night sounds of her bedroom became comforting and familiar once more. Gently, she relaxed into sleep.

This post was written as part of Wego Health's Health Activist Writer's Month Challenge.

Tuesday, 24 April 2012

Health Writer's Month: Who's Afraid of the Big, Bad, Wolf?

Today's Health Writer's Month topic is: Health Mascot. Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!

It seems we've been here before.

Lots of people use butterflies on their sites (in fact I use a lovely one my daughter designed for me) to symbolise lupus. This comes from the "butterfly rash" that many lupus patients have across their nose and cheeks.

The butterfly is sweet and delicate.  It is perhaps a good symbol for lupies - for the same reason as it is sometimes used as a symbol for resurrection at Easter... The caterpillar emerging from the cocoon as a beautiful butterfly is a symbol of new life - life overcoming death, disease, the things that would oppose it. The butterfly's a great symbol for lupies, as we try to make the most of the life we have, despite our sometimes-failing, often-painful, bodies.

When I think of lupus itself as something living, it's a wolf. Lupus got its name from the wolf - that butterfly rash was thought to look like a wolf bite. And I can tell you, even without a butterfly rash, lupus does indeed bite.

Lupus is dangerous, threatening. It's our primal fear, the monster of fairy tales. The big bad wolf isn't just at the door, he's made it inside. Like the monster dressed in Grannie's clothes, he's already infiltrated a trusted space - our immune systems.

But we read our fairy tales, and we know the big, bad, wolf can be beaten, eventually. Sooner or later the woodsman with the axe will come and rescue us - of course the woodsman is wearing a white coat in a lab somewhere. In the meantime, who's afraid of the big, bad wolf? If I'm going to be honest, I quite often am. Sometimes, I'm just angry and defiant.  Sometimes, I try to find ways to outwit him. But always, I know I have to respect him.

Never under-estimate the big, bad wolf, because if you build your house out of straw, you know he's going to blow it down.

This post was written as part of the Wego Health Health Activist Writer's Month Challenge.

If you like either my "It's OK to love a lupie" butterfly or my "lupus bites" wolf, you can find them both available on shirts, mugs, etc at

Lupus Infographic - Patient Experience with Lupus Survey

Lupus Infographic:
Prefer to read a written report:

'via Blog this

This survey was done in the USA, but I suspect that a lot of the results would be similar here in Australia. Patients with lupus tend to downplay their symptoms to avoid worrying family and friends - but also to under report to their doctors.

Monday, 23 April 2012

Lupus Basics - Infographic from Achieve Clinical

Want to brush up on the basics of lupus? Facts and figures, what lupus is, are all summarised here.

Health Writer's Month: Facing the Wolf - Alone

Today's topic is: Health Activist Choice Day 2! Write about whatever you like.

I'm having coffee tonight, with my ex-boyfriend. That's got me thinking, OK crying, about what I'm missing out on. That's not particularly about that relationship, which failed as some relationships do, but for what I had been looking for when I set out on that relationship.

When I put my profile on the dating site where I met Mr Wonderful, I knew I had lupus. I was relatively well, but I knew that things wouldn't always be that way.

I was looking for something very specific and very permanent. I wanted marriage, but not like the one I'd already had. I wanted someone to share my life with - the good and the bad.  I wanted someone I could plan with, someone I could discuss decisions with, someone I could always count on. I wanted someone who would love me in spite of my condition.

I wanted someone who, on the days when I have the clumsies and drop things constantly or walk into walls, on the days when I have brain fog and don't remember why I have car keys in one hand and a bottle of milk in the other, on the days when I'm in too much pain to get out of bed, would just hold me and tell me it's going to be all right - we'll get through it together.

I wanted someone to face the wolf with me.

I never expected it would all be one-way. Even on my worst days, I would hope I have something worthwhile in me to bring to a relationship.

Now I'm sick. I don't have the energy to look for someone to share my life with.  I'm in too much pain to go through the effort of getting to know someone new.

It's not that I'm completely alone. My (now adult) kids have been amazing in supporting me. So have my friends and my church family. The on-line lupus community does wonders to help keep me sane, and keep the challenges of life with this disease in perspective.

But at the end of the day, no-one comes home to me just because they chose to be with me. The kids will finish uni, and they will go on to have lives of their own.

I will live alone.

Then it will just be me....and the wolf.

This post is part of Wego Health's Health Activist Writer's Month Challenge.

If you like my lupus wolf - you can get him on shirts, mugs, etc from

Sunday, 22 April 2012

Health Writer's Month: Things We Forget

Health Activist Writer's Month Challange, day 22. Today's topic is:

The Things We Forget. Visit and make your own version of a short memo reminder. Where would you post it?

OK - I'm not about to go and post these around the neighbourhood, basically because I just don't have that kind of energy. But let's try to come up with some worthwhile reminders. I've stuck them up in my room - they're reminders to me.

This post is part of the Wego Health:
Health Activist Writer's Month Challenge.

Saturday, 21 April 2012

Registration Status of Benlysta® (belimumab) in Australia - GlaxoSmithKline Australia

Registration Status of Benlysta® (belimumab) in Australia - GlaxoSmithKline Australia:

'via Blog this'

According to GlaxoSmithKline Australia (see link above), their application for Benlysta to be approved for treatment of lupus patients in Australia has been rejected by the Therapeutic Goods Administration. GSK is currently appealing the decision.

You might recall that there were petitions in Britain to try to have the British decision to not allow the use of Benlysta there overturned. I understand there may be a petition being circulated here in Australia soon, I will let you know as soon as I know about it.

Health Writer's Month: Lupus Poem
Today's Health Writer's Month topic is:

Health Madlib Poem. Go to : and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

Well, here's my great poetic work - which makes no sense, and will never be considered for any literary award!

all in tired

All in tired went my pain sleeping
on a swollen pharmacy of fearful
into the worried appointments .

hot anxious analysis ed unpredictable and ing
the weak weakness before.

cold be they than auto-immune side-effects
the clumsy sore weakness
the sore weak weakness .

hot sore inflammation at a depressed symptoms
the isolated disease before.

joints at pills went my pain sleeping
sleeping the medicine down
into the worried appointments .

hot anxious analysis ed unpredictable and ing
the painful tablets before.

sick be they than forgetful sore exercise
the anxious depressed weakness
the confused unpredictable n weakness .

hot confused doctor at a fearful rheumatologist
the chronic physiotherapist before.

weight at rash went my pain sleeping
sleeping the immune system down
into the worried appointments .

hot anxious analysis ed unpredictable and ing
the chronic diagnosis before.

creaky be they than unexplained prescription
the unexpected aching weakness
the medical pharmaceutical weakness .

hot medical fatigue at the tired immune system
the pharmaceutical blood tests before.

All in tired went my pain sleeping
on a swollen pharmacy of fearful
into the worried appointments .

hot anxious analysis ed unpredictable and ing
my diet hurt weight before.

- Iris Carden & e.e. cummings

Create Your Own Madlib on

Written as part of Wego Health: Health Activist Writer's Month Challenge

Friday, 20 April 2012

Health Writer's Month: A Miracle Cure

Today's Health Writer's Month topic is one that lots of people with lupus, and similar conditions dream of.
Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer ;)

Potential Lupus Cure Goes To Clinical Trials

Royal Brisbane and Women's Hospital
Researchers at the Queensland University and Royal Brisbane and Women's Hospital have developed a potential new cure for lupus.

Head of the research team, Professor John Bloggs, said the revolutionary new treatment had shown good results in rats, and had now been approved for clinical trial in humans.

He said the new treatment would effectively rebuild the over-active immune systems of lupus patients.

RBWH Rheumatologist, Dr Sarah Tinycat said: "The immune system is meant to protect the human body from infection."

"In lupus patients, the immune system becomes confused, and attacks the body's own healthy tissue."

Dr  Sarah Tinycat
Photo courtesy
Dr Tinycat said the new treatment would take the patient's own adult stem cells, and use them to build  a new immune system for patients with lupus.

Radiation therapy would be used to "kill the existing, malfunctioning, immune system."

She said the risks were similar to those faced by leukaemia patients undergoing bone marrow transplants.

"Until now, we've only had treatments to manage lupus.  This is a permanent cure," Dr Tinycat said.

She said the new procedure could potentially be extended to other auto-immune disease as well as lupus.

Written as part of Wego Health's
Health Activist Writer's Month Challenge
Disclaimer - this is entirely fantasy.  Keep hoping and praying for the day it's true! (Maybe not the bit about having a kitten for a rheumatologist, though.)

Thursday, 19 April 2012

Gluten Free Recipe: Bean and Corn Toasties

Ordinarily, on a Thursday, I tell you what I'm going to do with the Thursday night weight loss group at church.  Tonight, I'm going to be going through some of the basics of using the Calorie King website with them. So today, instead of a weight loss post, I thought I'd share with you the recipe for my lunch today. I liked it, I hope you enjoy it too.

Bean and Corn Toasties
My lunch: Bean and Corn Toasties

2 Gluten free corn tortillas
1 tablespoon five bean mix (drained and washed)
1 tablespoon canned corn kernels
1 tablespoon tomato salsa
25g reduced fat tasty cheese (sliced or grated.)

2 cups fresh salad vegetables
2 teaspoons lime juice
couple of drops sauce

Put the beans, corn, salsa and cheese between two corn tortillas, and put in a sandwich press. (If you don't have a sandwich press, put under the grill, and turn once first side is toasted.)

While your sandwich is toasting slice the vegetables and pile them on the plate.  Sprinkle with lime juice and Tabasco.

Once tortilla "sandwich" is toasted, and the cheese melted, cut into quarters and serve on the plate with salad.

All done: a quick, easy, and filling lunch for one.

(The side serve of pills is optional!)

Health Writer's Month: Five Dinner Guests

Today's Health Activist Writer's Month Challenge question is:
5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why? 

If you'd asked me this question before I was diagnosed with lupus, the kinds of people I would have immediately thought of would have been Mother Theresa, Martin Luther King Jr, John Wesley, people who did amazing things because of their faith.

Since lupus, and since I've begun blogging, there's a whole new group of people I'd really love to have a get-together with. Because of the cost and physical energy that international travel requires, I'll probably never meet any of these people face-to-face, but I've spent time with them, and learned quite a lot from them.  I'm going to give you the links to their blogs, so you can spend some time with them as well.

Brynn Hultquist,
Firstly, from Canada, let's invite Brynn Hultquist.  You can meet Brynn at Lupus Interrupted. This amazing woman is actually doing the Writer's Month Challenge, while organising her wedding (which she's doing everything for herself.)  She's mum to five kids, even though she looks like she's 15, and is a daycare mum as well. 

She calls herself a "chronic badass" and tells it like it is. She's not afraid to throw in a few expletives if they're the appropriate words for the situation.  She has other conditions as well as lupus, but takes life head-on. In one of her blog posts she has an amazing photo of her dressed as a warrior princess, with a huge sword. That's what her life is like - it's all an adventure - and as with all adventures there's trials and perils along the way. She shares the trials and the triumphs with remarkably good humour, and complete honesty. 

Tiffany Peterson
Now, from the USA, how about Tiffany Peterson. You can meet her at Tiffany and Lupus. What can anyone say about Tiffany? She's inspirational.  When I first found Tiffany on-line, she was wearing a gorgeous purple wig - every time I saw it on Twitter, it would brighten my day. 

Tiffany's probably half my age, but I want to be like her when I grow up. She's everywhere, writing for practically everyone. She loves cooking - which we definitely have in common, and she's done cake stalls and all kinds of things, raising money as well as awareness for lupus.  She also founded "Friends Against Lupus", who very helpfully keep posting on Facebook reminders for lupies to take our medicine!

Christine Miserandino

While we're in the USA, let's invite Christine Miserandino.  You can meet Christine at But You Don't Look Sick. Hers was the first blog about lupus and other chronic illnesses I ever read.  For people with chronic illnesses, Christine invented the term for us to define ourselves: that term you might have encountered "spoonies" for people with chronic illnesses, comes from her Spoon Theory, which you can read about on her blog.

For me, and I suspect for many other health bloggers, Christine was the person who gave me the courage to speak up and tell my story, because she had already stood up and told hers.

That only leaves me two more.... I've just been going through my Lupus Links page, thinking: "There's at least another six people on this list I'd just love to meet."  I guess some of them are going to have to wait for another dinner party!

Still in the USA, meet FaLanYa, via this YouTube clip of her song "Blame it on the Prednisone".  Or you can meet her at A Lupie Existence. Just watch the clip, and you'll know why we just have to invite her - she's just got to be the life of the party.

Sure she's got lupus, but FaLanYa's also got a killer sense of humour! How much fun would you have with someone who could come up with this song (and the clip - check the out-takes at the end)?

Just got to have her there!

That leaves only one place at the table.  I wonder if just one man could cope with being at a table with all these chronically-ill women.

Dr Shashank Akerkar
Maybe he wouldn't want to come, given that everyone else at the table would be a woman, and a potential patient, but let's stop by India and invite Dr Shashank Akerkar, anyway.  You can find out about him at Arthritis Support Board.

What's special about Dr Akerkar as opposed to any other rheumatologist?  To start with, unlike the rheumatologist I pay $100+ per visit to see, he puts information about how to manage life with arthritis on the internet for free. That's right, he's a doctor who thinks it's a good idea for patients to have information. How's that for an unusual concept? Beyond that, he puts comics about arthritis on Twitter and Facebook every day, which I really look forward to.

Well there's the guest list. Now the really difficult question: what am I going to serve?

Wego Health:
 Health Activist Writer's Month Challenge

Wednesday, 18 April 2012

Patients for a Moment Blog Carnival: Who Are You Without Your Disease? | Somebody Heal Me

Patients for a Moment Blog Carnival: Who Are You Without Your Disease? | Somebody Heal Me:

'via Blog this'

Patients for a Moment asked health bloggers: "Who are you without your disease?" The above link will take you to some amazing stories!

Health Writer's Month: Random Phrase.

Today's Health Activist Writer's Month Challenge Prompt is:

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.

So, firstly, let's choose a book. The one I was reading while waiting to see the doctor this morning was:

Hunter, Dr David. Living With Arthritis: the Complete Self-care Guide. Sydney: ABC Books, 2006.  (Amazon doesn't have it listed, so I can't give you a link.)

Let's grab a sentence from page 127, on exercise. Regular, moderate exercise offers a whole host of benefits to people with arthritis, the most important being that it replenishes lubrication to the cartilage of the joints and can reduce stiffness, pain and swelling; it builds strong muscles around the joints and increases flexibility and endurance; and it can decrease bone loss.

All good stuff.  I have a love-hate relationship with exercise. I hate it when I'm not allowed to do the exercise that I used to love.

I loved martial arts - I did judo as a kid and taekwondo as an adult.  Both of these are excellent forms of exercise - they work on stamina, strength and flexibility - all the areas exercise is supposed to cover. They also require a body that actually works properly. You just can't play a contact sport when you have lupus (well, at least it's not advisable to do so.)

 What comes immediately to mind is using my entire strength to kick a kick pad, at chest height, over and over and over again, why the coach yelled: "Come on Iris! Crunch it out! This is for the nationals!" I'd be flat out doing a round kick at knee height now. I'd be flat out doing a front kick (which doesn't require anywhere near as much hip flexibility) at knee height.

From taekwondo, I went to the more ladylike Curves. I loved the Curves workout. It's circuit training, but with their Curves Smart program, everyone carries a little smart card to plug into each machine as they come to it.  The computer knows everyone's individual capability and keeps everyone working at their own set level.  It was a combination of resistance and cardio workout, with a stretching program to cool down. Again, an all-round exercise program, and this one was tailor-made for the individual.

Then came the fateful day when my specialist said I had to reduce the amount of steroid I was taking.  "But, but, but," I stammered, "what about my exercise?"

That's when I got my lecture about how much I was doing. That whole "use it or lose it" thing works for most people.  With lupus, there's a big risk that if you over-use it you lose it, so my rheumatologist told me. (Of course, he may have just made that up to be mean because he knew how much I loved Curves!)

Didn't I need exercise?  He recommended I do hydrotherapy instead.

Wego Health:
 Health Activist Writer's Month Challenge
So now, I've started my new exercise program.  I've been to the physiotherapist, and have a tailor-made individual work-out plan. And I drive to a heated pool to get in and walk backwards and forwards and side to side. Move my arms and legs in the water, and generally have a play around.  It all seems so simple, except that with my steroids down to such a low dose, it's as hard as a workout at Curves used to be when I was on the higher dose of steroids, or taekwondo training was when I was healthy.

Tuesday, 17 April 2012

SlimKicker Calorie Counter and Level-Up Weight Loss Game

SlimKicker Calorie Counter and Level-Up Weight Loss Game:

'via Blog this'

Last year, Christine from contacted me and asked me to take a look at the weight loss game app she was developing.  It looked exciting - turning weight loss into a role playing game. I've been looking forward to trying the finished product - and here it is.

To play the game, you record your eating and exercise. (That's fairly standard, my weight loss group has been doing that on the Calorie King since we started.) What's different is that by eating healthy food, and doing exercise, and following challenges, you gain points to go towards virtual prizes.  It's to add a little incentive, and keep the work of losing weight interesting.

Now, to experiment.  I'll let you know how it goes.

It's free to sign up, so I might ask the ladies at my weight loss group to have a test run as well.

Any readers want to have a go, please give a comment, let us know how it works for you.

I've just seen on the television news, that in America (where else), a doctor is putting people on naso-gastric tube feedings to help them lose weight.  Apparently you can lose 10kg in 10 days (and lose $US1500), simply by eating as if you were an intensive care unit patient. I'm utterly grossed out by that - and I made comments about it on social media and found out a lot of other people are grossed out by the same thing. But that shows the extremes people are willing to go to in order to lose weight.

I think I'd prefer to try the weight loss role playing game. Did I mention you can sign up for free?

Scientists Discover New Lupus Genes |

Scientists Discover New Lupus Genes |

'via Blog this'

Three genes have been linked to lupus in different racial groups.  This may be a step towards better treatments, or even a cure.

Health Writer's Month: Tough Life Lessons
Today's Health Writer's Month Challenge topic is:

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

Well, what can I say?

I've always been a fairly independent person. If I don't know how to do something, I'll usually work it out or find it out for myself. I grew up in a family that fixed their own cars, did their own house repairs, made their own clothes. I've always just assumed I could do things, until I was proven wrong.

That brings us to one of the toughest lessons of lupus: I can't do everything for myself.

I still like to do as much as possible for myself, but at times, I just can't. I get gadgets to help me. I break all my tasks down into their smallest bits and do them a little at a time.  If there's a lot of groceries to get, I order on-line and have them delivered instead of trying to push a shopping trolley around the supermarket.  I have endless ways to try to get through  my day, both for work and for housework and even my social life. (OK most of my social life is on-line now, I admit it. But that just makes it more special when I actually do see my friends.)

Sometimes, I have to give in and admit that it's just all too much. Sometimes, I have to accept the offer from the wonderful lady who has caught me up on my housework. Sometimes, I have to accept the offer from another wonderful lady who has changed my sheets for me because the bending, stretching and lifting are just too much. Sometimes, when I have a ton of things to do and the kids say "go to bed", I just have to do as I'm told. 

It's been a tough lesson to learn. I'm not superwoman.  There's times when I need help.

Monday, 16 April 2012

Health Writer's Month: The Pinboard

Wego Health:
 Health Activist Writer's Month Challenge

Today's health writer's month topic is:

Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

OK, my Pinterest board is now set up.  You can find me, not surprisingly as Iris Carden, if you're looking for me there.

My first pin is the image I made earlier in the month on "keep calm" poster day.  A sad part of taking lupus medications is that there can be all sorts of strange side effects.  One of them is that steroids can cause facial hair to grow. Great for men who like beards, but women tend to not want to look like Wolverine.

I guess, next I would like to pin up a picture of my medicines.  It's my picture from a post called "Pill Sorting Day". Sorting my pills for the week is a time-consuming, but vital task. Some are the same from day to day, but some, such as the chemotherapy drug methotrexate, are only once a week at a specific time. Keeping track of medications, and which dosages were changed by visits to which doctor, etc, is a challenge, but it is very important.

Let's add in some humour - and something about the fatigue involved in lupus. I have days like this... I have weeks like this.... when I don't even have the energy to procrastinate, it's on the to do list for tomorrow....

Next, I'm adding in my Lupus Bites design from my shirt shop. My snarling lupus wolf is my mascot, and I have a shirt with him on.   I won't say too much about him now, because I know there's a challenge topic coming up on my mascot.... so stay tuned.

Sunday, 15 April 2012

Health Writer's Month: Writing Style

Wego Health:
 Health Activist Writer's Month Challenge
Today's challenge topic is:

Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

After reading the questions, I begin to suspect I have no style!

I used to be a journalist. That meant I gathered the information, then sat down and wrote the story as fast as humanly possible, because there was a deadline coming and I needed to get enough stories written.

That's kind of what I do. Often the information in a blog is from my own life, so gathering information, is simply considering what I want to write about while drinking my morning coffee.  Other times, I really do research - and there will be references or links to the book on Amazon somewhere so you know what my sources were.

Either way, once I have my information, I just write. I try not to fall back into the habit of active voice sentence construction and inverted-pyramid format, (journalists' writing style), but to vary what I write a bit. I don't want you constantly feeling like you're reading the newspaper. Mostly, however, I still just work on autopilot. I know what information I want to convey, and I write it. It's a matter of long habit.

I usually do the title first - again it's an old habit. In journalism, we always put something at the top of the page to identify the story. (Not the headline that comes later. The "slug" is just a word or two - if this were a newspaper story, it might have "style" written on it as a slug.)

Where do I write? That has changed a lot!  I do still write at my desk at times. When I'm not feeling well, I lie in bed or on the couch to write. (That's something I couldn't have done back in the far reaches of history when I was a journalist - all I had was desktop computers.)

Saturday, 14 April 2012


UK woman loses £10k in online dating scam – Afghanistan soldier:

'via Blog this'


You do not need to be on "internet dating sites" to be targeted for this scam.

You know that woman who claims other women hate her because she's too beautiful? Well, I'm not her. But I have had two "US soldiers in Afghanistan" contact me in the past two days on regular social media sites  because they saw my picture and fell in love with how beautiful I am.

We had some fascinating conversations.  One is Bobby Norman Boland, a staff sergeant on Skype, but a Major-General on Facebook. He's about to retire from the army after 21 years service, and has a "big future" ahead of him. He's planning to buy either a hotel or a hospital. He is widowed and has no family except a young daughter. In the midst of a single conversation he went from spelling and grammar that would indicate English was second language (and a poor one at that), to perfect spelling and sentence structure. When I asked about the change in writing style it was because he'd moved from a palm-held device to a desktop.

The other is Barella Hiller, the General in charge of the forces in Afghanistan. (Who of course has time to search the internet looking for pictures of women he wants to contact, while he's responsible for managing a war.) He is quite coincidentally coming to my home state soon to invest in real estate and telecommunications. His English was also of the English-as-second-language-but-not-very-well-learned variety.

I did a Google Search for both these gentlemen's names: 

Boland: had the Skype account he first contacted me on, and a Facebook account that was a couple of days old. I could find no other sign that he existed. One could say, fair enough, if he wasn't a Major General, maybe he really had never done anything to bring him to the attention of anyone in the world.

Hiller: I could no trace except the Skype profile he contacted me with, and the link warning about the scam that I've placed at the top of the page. General in charge of the US forces anywhere?  Fairly sure he would have earned a couple of column centimetres in someone's newspaper at some time since the internet began.

Ladies, the lesson is that men can be creeps on the internet just as much as in real life. Just as you wouldn't immediately trust a stranger in the street is everything he says he is - same goes for a stranger on-line. I'm not saying you can't meet someone wonderful on line, but if it smells fishy it probably is - and definitely run a Google search on any stranger who wants a personal relationship with you.

Health Writer's Month: My Dream Week

Wego Health:
Health Activist Writer's Month Challenge
Today's Health Writer's Month topic is:

My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

My ideal day?  Hard to think of just one day.

Let me tell you about a really special week I had some years back.
(Sorry, I can't give you the actual photos - they were on a computer that died - no back-up oops!)

The Pacific Sun
Thanks to the wonder of the internet - I can give you a picture of the ship. Yes, my really wonderful week was when I took my kids on a cruise.

I know some people will yawn and go "so what?" but for me this was exciting.

Firstly, it's the only time I've ever been out of Australia. (OK we went all the way to Port Villa and Lifu and Noumea - such a loooooong way.)  Secondly, I booked it two years ahead and that's how long it took me to pay for it.

So we went on this awesome cruise almost five years ago. (I know because my passport's about to expire.)

It was the second holiday I'd taken the kids on after my divorce, the first had been a week at the Gold Coast. It was a time to celebrate that we were free to just be ourselves, and to do things we'd never dreamed we'd be able to do.

Between that first holiday on the Gold Coast, and our overseas cruise, I had been diagnosed with lupus.  I still wasn't really sick, but everything I'd read and learned told me I could become incredibly sick indeed. So this trip was to make the most of my relatively good health - because I did not know how long I would stay healthy and I wanted to make some very special memories with the kids.

So for a week, we ate great food that I didn't have to cook, we went to shows, we had someone else make our beds, and we visited places we'd never seen. We saw snippets of other cultures (yes, only the bits put on display for tourists, but at least something to remind us that the world is bigger than the little part of it we see every day.)

For people who take overseas holidays regularly, this probably all seems pretty boring. But for me, a week doing fun and interesting things, with my two favourite people (my darling children), it was the absolute best!